Legislation launched by individual MPs—known as private member’s bills—rarely pass into law. So you have to wonder why Health Minister Leona Aglukkaq expended so much energy trying to quash Liberal MP Kirsty Duncan’s Bill C-280, which called for “a national strategy” for chronic cerebrospinal venous insufficiency, or CCSVI. (Duncan’s bill was defeated by six votes on Wednesday night.) Duncan, the MP for Etobicoke North, has long been a tireless advocate for scientific research into CCSVI, the condition identified by Italian vascular specialist Paolo Zamboni, who linked extracranial venous blockages to multiple sclerosis; Zamboni posited restoring blood flow with a balloon angioplasty relieved MS symptoms—and even arrested progression of the degenerative disease in some cases. Duncan’s bill had called for phase II clinical trials and follow-up care for the thousands of Canadians who have traveled for CCSVI treatment overseas.

The health minister’s aggressive opposition of the bill ramped up considerably in recent weeks. On Feb. 10, hours after a documentary about CCSVI on the CBC’s Nature of Things presented data showing one-third of MS patients significantly improve after CCSVI treatment, one-third show moderate improvement and one-third show no-to-little improvement, Aglukkaq convened an information meeting for MPs on Feb. 13*. Given that Duncan had scheduled an informational breakfast for MPs with scientists advocating CCSVI on Feb. 14, the move appeared to be a preemptive strike. Then, on February 17, the health minister sent a letter to MPs critiquing Duncan’s bill that contended CCSVI science is “indefinite.” Duncan, who holds a Ph.D. in medical geography, posted a rebuttal on her website, which of course went viral: the MP accused the federal health minister of “spreading patently false information about the current state of CCSVI research and about venous angioplasty in general.” Even the Canadian Medical Association weighed in at the last minute, sending Duncan a letter that echoed the minister’s objections two days before the vote. The MP countered its claims on her site today.

If Aglukkaq had wanted to shine spotlight on a backbencher’s bill, she couldn’t have done it more effectively. Clearly she was concerned support for Bill C-280 was gathering momentum. It’s also likely the health minister was under pressure from special-interest groups opposed to any thinking about MS that challenges the autoimmune model for the mysterious, incurable condition; though unproven, the model has given rise to a drug therapy juggernaut worth some $10-billion internationally. These drugs come with a high price tags—and side effects: This week Health Canada announced it’s investigating Gileyna, an oral MS medication approved in March 2011 that runs $30,000 per patient annually and has been linked to 11 deaths (none in Canada).

But watching the glacial pace of CCSVI research since it came to public attention in late 2009 suggests other political forces may also be at play—even the prospect that CCSVI is a trial balloon for the increasing decentralization of health care. Duncan and fellow Liberal MP Dr. Carolyn Bennett began calling for the feds to gather data and conduct research in early 2010, as Canadians with MS began traveling offshore for treatment.

Two years later, we’re still waiting, despite a lot of government busy work. In August 2010, a panel convened by the Canadian Institute of Health Research, the country’s funding arm for scientific research reviewed select CCSVI studies and declared there was not enough evidence to warrant clinical trials. Ten months later, the CIHR announced a meta-study it had commissioned provided evidence that a small-scale phase I/phase II trial (testing safety/efficacy, but not actual treatment) was warranted. There’s also been a flip-flop on tracking the tens of thousands of Canadians who’ve travelled for treatment. The CIHR said it wasn’t in their mandate, then announced it would set up a registry, but not until September 2012. The quest for rigorous data isn’t only a Canadian problem. As revealed at the five-day International Society of Neurovascular Disease (ISNVD) in Orlando last week, an estimated 30,000 CCSVI procedures have been performed worldwide, though definitive data exists on only 300 or so.

Meanwhile, Saskatchewan has gone rogue, spending $2.5 million on a CCSVI treatment trial in Albany, NY this spring: 670 MS patients applied for 86 slots. Angela Lagace, a technician at Barrie Vascular Imagining in Barrie, Ont. trained in Zamboni scanning protocol, will travel to Saskatchewan to teach technicians follow-up scanning. Kenneth Mandato, an interventional radiologist the Albany Clinic, told Maclean’s they’ve performed the CCSVI procedure on more than 2,000 patients; he estimates 80 per cent of them were Canadian. Mandato presented a preliminary study of 240 patients at the ISNVD meeting that revealed a 1.6 per cent risk of major complication during treatment and concluded it is safe—and added he has seen remarkable improvements in patient quality of life. According to buzz at the conference, other provinces are planning treatment trials.

In her letter to Duncan, Aglukkaq called for “the independence of our scientific process and the safety of our fellow Canadians,” adding “However difficult the decision is, as parliamentarians we have an ethical obligation to put patients’ safety first.” Yet Health Canada permits experimental procedures that haven’t passed clinical trials under its Special Access Program which are “limited to patients with serious or life-threatening conditions on a compassionate or emergency basis when conventional therapies have failed, are unsuitable, or are unavailable,” according to its website.

A high-profile recent example that has not gone unnoticed by CCSVI advocates is renal denervation, a treatment for drug-resistant hypertension performed for the first time in Canada at Toronto’s Peter Munk Cardiac Centre in January. The technique to lower blood pressure pioneered by Australian researchers entails snaking a specialized catheter through the groin, then applying a heat source to deactivate nerves on the artery that feeds blood to the kidney. The first treatment study involving 106 patients was published in the December 2010 issue of the Lancet: it found blood pressure in 84 per cent of subjects declined (as it did in 35 percent of controls) after six months. “The results [of the study] are not enough for me to be confident,” says Dr. Barry Rubin, the medical director of the Munk Centre who sat on the CIHR panel assessing the need for CCSVI trials. “But it’s enough for me to be interested.” One concern, he notes, is long-term effects on renal nerves as well as the need to repeat the procedure.

Sandy Logan, a nephrologist at Toronto’s Mount Sinai sees promise in the renal denervation procedure but questions the rigor of the science: the study wasn’t double-blinded nor was there a placebo group, he says, adding it was bankrolled by Adrian Inc., the American company that developed the catheter used in the procedure—which cost US$6,000 each. (Clearly, there’s money to be made: in November 2010, a month before the renal denervation study was published in the Lancet, Minneapolis-based Medtronic Inc., the world’s largest medical device company, announced it was buying Adrian for US$800 million cash up front and cash payments equaling revenue growth until 2015.) Logan is currently participating in an independent Belgium-based randomized control trial. Results won’t be available for several years. Until then, Canadians should have access to renal denervation, he says, drawing an analogy to CCSVI: “You have to do properly done studies to know if it’s going to work or not. You can’t just say we’re not going to do it in Canada until we know, because nobody in Canada will have any experience.”

As CCSVI is floated as a trial balloon, the pins are coming out. In a letter posted on CCSVI Coalition yesterday, Dr. Michael Shannon, a former deputy surgeon general and former co-chair of the FPT Steering Committee on Blood Governance, likens the federal stall on CCSVI research to the tainted blood scandal. “It would seem that we have learned nothing from The Krever Commission which very clearly placed the blame for both the HIV and Hepatitis C misadventures of the 80s on the shoulders of the Red Cross and Health Canada,” Shannon writes, claiming the federal government’s “inability and unwillingness to protect the Canadian public” in the blood scandal, which cost thousands of lives and billions of taxpayer dollars in health care costs and lawsuits, was driven in part by financial considerations. He suggests financial constraints are also behind the reluctance to fund CCSVI treatment trials: “I suspect that there is significant budgetary pressure within CIHR,” writes Shannon, who calls for a full disclosure of the CIHR’s deficit situation this year and next. “The lack of definitive action on the part of governments, government agencies such as the CIHR and NGO’s such as the Canadian MS Society is disgraceful unconscionable,” he says, a response that suggests fallout from a private member’s bill—even a defeated one—thrust into the spotlight is just beginning.

*An earlier version of the story stated that the Multiple Sclerosis Society of Canada was at the Minister of Health’s MP briefing meeting. This is incorrect.

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Senior Writer Anne Kingston covers contemporary culture—investigating everything from medical politics to the politics of food. She is the author of 'The Meaning of Wife: A Provocative Look at Women and Marriage in the 21st Century' and 'The Edible Man: Dave Nichol, President’s Choice and the Making of Popular Taste.'

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The medical politics blocking CCSVI trials

This is like the tainted blood scandal, and it does draw attention to questioning the motivation of the federal health minister along with the other nay sayers. It seems our health minister feels it’s ‘safer’ for Canadians diagnosed with MS to be good patients, be quiet and waste the precious time they don’t have. Safer? or more lucrative for certain parties?

This government has no intentions upsetting there financial gravey train with special interests…they make me ashamed to even say I live in Canada…this health minister and I put that lightly because she has zero
medical background went out of her way and dug that knife deeper into every ms patient in this country…her loyalties are with special interest groups…why would cma get involved? Did she contact them? She needs to be brought up in front of the ethics committee…or better yet quit…every Canadian needs to sit back and remember next election how this government said screw you ms’ers…and vote them all out…everyone knows someone who has ms…

I do not know that it would help if the health minister were a physician as they are divided on their opinions of this procedure. I do not know that you can call her action of seeking the advice of Canada’s Medical governing body as unethical. Who else could she turn to for advice…Who else should she turn to? The provinces are in charge of the health portfolios and they will do their own studies as we are seeing.

Just a stupid person trying to get her cut of the pie. She should be extremly ashamed of herself. Just because the Inuit don’t get MS she thinks it doesn’t affect them. but with the white diet taking over in the inuit communities soon enough they will have the same diseases as all the rest of canada. Lets see how long she stays on that side of the fence when her family starts to die from diseases.

The government of Canada missed a fantastic opportunity. When the story of CCSVI broke in Canada in Nov./09, they could have immediately sponsored a clinical treatment trial. This treatment trial could have been completed in a short time frame. If the results showed absolutely no improvements then the whole issue would have been put to rest. If the results showed even minimal improvements, the government would be touted as heroic–finally giving some hope for improved quality of life for MS sufferers.

Instead, they listened to neurological representatives of the MSSC who unfairly called it a “hoax”, ignoring the fact that these naysayers had huge conflicts of interest and it was out of their area of expertise.

Even with positive mounting evidence–both scientific and anecdotal–Canada is trying to do everything in its power to delay progress, betraying Canadians with MS by prolonging suffering and uncertainty.

The ignorance and cruelty of the government should dumbfound me but I’m not stupid–I understand enough about pharmaceutical lobbying, egos and greed to know what’s going on. It’s just astounding to see this depth of CRUELTY in a country that used to be known as compassionate!

I am very ashamed to be Canadian right now. ever since harper got his majority he has been screwing canada for all he’s worth. Selling the oil sands to china, screwing us with ms and all the other neurological diseases it could help and pulling out of koyoto. we are so screwed. by my best estimate it will be 2025 AT THE EARLIEST that Veinus Angioplasty will be approved here in Canada. so in the meantime 5200 canadians will have died from ms by that time. the year i listed is a best case scenerio, IF the govt stands by it’s word and does NOT interfere with the studies and everything goes fast in the review of the studies. so the 2025 estimate is probably going to be more like 2030

There have been numerous studies done, which you would see if you researched thoroughly and with an open mind. They should stop talking about this like it is a treatment for MS – it’s not. It is a treatment for a vascular anomoly that prevents proper blood flow within the central nervous system. It just happened to be a group of people with MS who had this vascular issue treated that brought this condition into the limelight.

If the Health Minister wants to ignore the world’s experts findings on this vascular disease, why does she not ask the true Canadian experts, (Drs. Haacke, McDonald, Hewitt, Embry to name a few), for up to date advice with this delima she has now created for herself.

Her secret meeting in Parliament Hill on Feb. 13, the day before MP Kirsty Duncan’s, (a former health studies professor & research scientist), information meeting on CCSVI, was nothing but a ploy to sway the weaker political members from making an fully informed intelligent decision on their own.
Her actions on delaying the progress on the findings for this disease is stinky & smells of “political corruptness”. I would think she could have done a better job at covering her butt.

Dr. Haacke is actually not an MD, knows a lot about the brain and veins, was one of the inventors of MRI, and works in Hamilton. I think he’s American. He probably knows as much about CCSVI as anyone, having studied so many cases with 3D and 4D and other kinds of imaging, based on MR and computation. :-)

I have said it before, and I will say it again…One has to wonder why the Health Minister would so strongly oppose such a simple, routine procedure for us with MS, when had we not had MS, but had blocked veins, we could have been treated here in Canada under our medical plan. Is she deep in the pockets of the pharmaceutical companies who make MS drugs? It certainly makes me wonder! What difference does it make if I have MS or not? If I have blocked veins, they are not supposed to be, so fix them! It is disgusting to see one group of people being discriminated against so blatantly. In this day and age, how can this discrimination happen?

Many, many thanks to Anne Kingston for this excellent article! I thank you and Macleans for keeping the truth in the public eye.

What an ugly truth, and sad reflection on Canada.

The “health minister” continues to make Canada the laughing stock of the world on the CCSVI issue. Does she realize that she lobbied to kill the bill, and along with it, 400 MS Sufferers each year while this travesty drags on?

It’s a very sad day for MSers. But in truth, it is also a very sad day for all Canadians. Today MS Sufferers were betrayed by our government. Who will be betrayed tomorrow?

Anne Kingston has done a wonderful job of presenting the facts. Aglukkaq should never have been made Health Minister – she has absolutely no medical or scientific credentials that warrant her appointment. Dr. Kirsty Duncan has an extensive scientific and medical background and as she has said several times, she followed the science. I would be most interested to know if Leona consulted a single expert in the fields of interventional radiology or vascular conditions. I somehow doubt it. Dr. Sandy MacDonald is one of the only doctors with knowledge of and/or experience in the testing and treatment of CCSVI, he is in Ontario, and I believe he has not been consulted once by Leona. There have been several seminars and conventions to debate CCSVI and a number of studies are being or already have been done, and all of them have found the procedure to be safe and significantly effective at restoring blood flow through the jugular and azygous veins. All indications are that the procedure has a more than 60% chance of providing at least some increase in quality of life. The traditional “disease modifying drugs” only have about a 30% chance of possibly decreasing the number and severity of exacerbations, which is virtually the same effectiveness of placebos; but recent studies are beginning to question if they may actually worsen peoples’ condition. None of these drugs improve quality of life. More recent drugs are killing people. Tysabri has killed numerous people and given debilitating brain infections to hundreds, but it is so much more helpful that many feel it is worth the risk. Now Gilenya, a drug that was fast-tracked through the research process is being investigated because of several deaths that have been linked to it! A drug that means huge profits for pharmaceutical companies gets pushed through without extensive research and studies; but a simple out-patient procedure that has a significant likelihood of life-changing and life-saving improvement is denied to us because we have MS, so we ‘belong’ to the neurologists! I don’t belong to anyone but myself, I WILL get my CCSVI treated even if I have to go to the US to do it and I WILL be first in line when Canadians with MS launch a class action lawsuit against those who are trying to prevent us from restoring proper blood flow within our brains!

Sandy MacDonald is a nephrologist. As such he is qualified to comment on the safety and efficacy of renal denervation for hypertension. This has nothing to do with angioplasty or CCSVI. If he has particular knowledge of and/or experience in the testing and treatment of CCSVI, it would be interesting to know his thoughts on the subject.

Venous angioplasty is not without risk. Venous stenting is carries a significant risk of distal embolisation of the stent to the heart and lungs. The difference between arterial and venous angioplasty and stenting is that arteries get narrower further downstream from the plasty site. Veins, on the other hand, get wider. The point is that arterial stents do not tend to move from their site, whereas venous stents can and do. That is why venous stenting is an uncommon procedure.

Nargent, it appears that you missed the crucial points in Open-minded Person’s post and you are somewhat fact-challenged. Dr. Sandy McDonald (not “MacDonald”) is a FRCS(C) specialist in general surgery and in cardiovascular and thoracic surgery. He has been quite vocal in the media as well as before Parliament regarding the subject of CCSVI and he is qualified to test and treat those with the condition.

Stents are rarely used or required. Prior to the procedure, patients and fully
informed of the risks and benefits of stenting and are given the
opportunity to opt in or out should the necessity arise.

This simple, non-invasive procedure has enhanced the quality of my life (and ergo, the lives of my loved ones) immeasurably. Ditto for thousands of my fellow medical refugees and their families and friends.

Dr. Sandy MacDonald is one of the only Canadian doctors to have successfully treated CCSVI and his colleagues at the Barrie Vascular Imaging Clinic have been trained by experts in CCSVI imaging he has been a strong advocate for CCSVI, but like other Canadian doctors, he has been blocked from doing the procedure or acting to advance its diagnosis and treatment. Angioplasty is arguably the closest thing to a risk-free procedure there is; getting a wisdom tooth pulled is as risky if not more risky than this procedure.
Stents haven’t been mentioned; why do you bring them up? There are a number of companies that produce stents that are working to develop stents specifically for the veins and from what I understand, most of the clinics that do the CCSVI procedure do not advocate the use of arterial stents and haven’t for a long time.

Nargent may I ask exactly whom you are getting your information from? I know for a fact that Dr. Zamboni has not endorsed the use of stents. There is evidence that the only safe place to use a stent is the Azygos vein, not the jugular veins. If canada wasn’t dragging its ass these people would not have had to go to where ever they could get the cheapest deal on a dr. I firmly believe that if Canada had moved on the issues as soon as it was made public than the majority of this mess would have been avoided. At present best estimate puts the number of pple around the world at 30 000 who have had the procedure. It is SAFE. Look into the numbers and see how many people die from dentists and their practices? farrrr more than have died from Veinus Angioplasty.
As for Sandy MacDonald do your research and you will find that he has offered to train pple in Canada to do the proper scans but the govt wouldn’t allow it. no medical procedure is without risk. If you want to know his opinion on a subject ask him. Or is that too easy an answer for you?

Dr. Zamboni himself recommended against the use of stents. Now after a few years of research they recommend against the use of stents in veins except the azygos vein. i didn’t see why you brought up stents. the majority of us know that stents are not good to use in veins but somehow it keeps on being brought up. if i ever get to go for the procedure I’ll fight them tooth and nail against putting in a stent. The angioplasty is safer than getting a tooth pulled out. seriously, look up how many pple die from that common procedure.

Why with so many procedures having taken place is there so little definitive data….30,000 procedures and only data on 300? Surely, the record keeping was not that appalling…where did all of it go? Also, why did the Canadian Medical Association suggest caution in proceeding if there is little risk and so much gain (few side effects and 1/3 of patients will benefit greatly)? Interesting article.

That is only the studies that the naysayers will look at – the few that were done incorrectly and so were not favourable. There have been and are multiple studies that are more supportive of Dr. Zamboni’s initial findings that the pharmaceutical companies and neurologists don’t want anyone to look at!

Yes as Dr. Zamboni is aware his trials have to be replicated by others. If you remember Dr. Weaver and the whole vaccine and autism debacle, no one physician can make claims and have them taken at face value. The results that Dr. Zamboni accomplished in his trials have to be replicated consistently by others. I understand that neurologists have not been on board with this procedure but this International Society is also made up of vascular surgeons who are very much in favor of the procedure. There is no excuse for a paucity of good data if so many procedures have been done.

Should be good data. There is less on the one side, than the other. Some of the reasoning and interpretation of some of the data has been questioned, because it conflicts. Studies are important, but should sick people wait while scientists argue about how many neurologists fit on a pinhead?

Why? Because most people refuse to deal with the MSSC (MS Society of Canada) and their dirty underhanded tricks. Who’s to really say it was 300? The MSSC and The Harper government are in bed and their pimp is Big Pharma. The CMA go involved because the health minister forgot about them until the 27th of February!

AND yes it is a very well written article setting the record straight. Thank You Ms. Kingston.

No, that lack of data that Ms. Kingston is reporting about nothing to do with Canada. It is the International Society for Neurovascular Disease which according to its website is not only made up of neurologists and neurosurgeons but also vascular surgeons who are very much in favor of this procedure. No one can think that they can be performing tens of thousands of procedures and then ony provide well documented data on 1 percent of those procedures and then expect to get funding and the go ahead for further trials. You look incompetent, lazy or arrogant, especially in light of the fact that this is a controversial procedure.

Whether the arguer is lazy or incompetent or arrogant has nothing to do with whether the argument is true. In Logic 101 that would be called arguing ad hominem. That might make the other arguer look less reasonable.

Everyone cannot afford to go around publishing papers. Some have to work at other things. Some of those are even helping people.

The most commonly used procedure in the world is a lot less controversial than some would like you to think. Doctors who know better have been frightened away from the use of stents by scaremongers, which has caused some people not even having MS to be under-treated. Everything has repercussions. Especially when the diagnosis of “MS” is so often incorrect. One of the main measurements of its severity, used in many drug trials, cannot even be used for predicting disability. A lot of things are a lot more controversial than venous angioplasty.

I am sorry but these physicians want money from governments for research studies and yet they can’t “afford” to keep proper records of the procedure or the followup they did on the patients they saw? Why would any government give them funding if they can’t prove that their procedures were worthwhile with proper documentation?
Every operation has a operative report which is an accounting of procedure. The record should also include the patient’s medical history, any tests (CT scans, etc) and a followup exam after the procedure. Physicians who are “helping others” don’t put these records together, administrative people do and they aren’t just required for publishing papers. They are infact, legal documents that go to the health records department of an institution. Now, would you like try again to explain why only 1 percent of the procedures had “definitive data”?

Healthcare Insider on March 2, 2012 at 1:44 pm

If you happened to look into it, the main places to get this treament are Poland, Mexico, and Bulgaria. Most people who have this 45 min outpatient procedure are from outside those countries. It’s hardly difficult to imagine why extensive data, including follow-up info, doesn’t exist for most of these cases.

SpeakingTruth on June 8, 2012 at 2:47 am

Thanks for the great article. My daughter was recently diagnosed with MS and I’ve been following this controversy closely for the last 8 months. I’m not convinced there is any long term benefit to this procedure, but I want to find out!! To oppose trials just doesn’t make any sense. The honorable minister is obviously playing a political game in the interests of the big pharmaceutical lobbyist and has no concern for the many suffering Canadians. It’s a disgrace. I would certainly vote to have her removed given the opportunity.

Health Minister Leona Aglukkaq just signed my son’s DEATH CERTIFICATE. I can’t help but wonder how she would feel if I signed her child’s DEATH CERTIFICATE having no medical background and having done no proper medical research to try to first save her child.

Thank you Anne for clearly reporting on how Canada’s Health Minister Leona Aglukkaq, feels about Canadian citizens living with MS and CCSVI. Leona Aqlukkaq’s actions are disgraceful. She “should” feel so ashamed of her actions and blatent disregard for suffering Canadians that she “should” resign immediately.

God Bless my son, who struggles so hard to stay human each and every day. God Bless Kirsty Duncan for fighting so hard for him and all Canadians suffering from both MS and CCSVI. God Bless all who will never stop fighting for my son’s life and the lives of all Canadians with CCSVI. I must believe that ‘truth’ will prevail and some how, some one, some where, will hear our plea and listen to the research already done and being done and DO THE RIGHT THING IN CANADA NOW. I cannot give up HOPE or I will help Leona Aglukkaq slowly kill my son. I can never do that. Therefore I will continue to up hold and support all who are doing the same for my son, and always have HOPE.

That being said, as a physician, I am all for a cautious approach to this procedure. The evidence in support of the CCVSI theory is far from conclusive, and venous angioplasty is neither cheap nor risk-free.

If this procedure is widely adopted before there is a definitive answer as to whether is is safe and effective (and to date such an answer does not exist), then we run the risks of wasting valuable health-care resources on an ineffective treatment, and possibly causing harm.

@ Doug, as a physician of course your going to back you fellow physicians. as a physician of course your going to side with caution if you have not already educated yourself on CCSVI. as a physician of course your going to play god with peoples lives. for god sake man look outside the box. look at what is happening outside of Canada. your ignorance is not surprising.

” If this procedure is widely adopted before there is a definitive answer
as to whether is is safe and effective (and to date such an answer does
not exist), then we run the risks of wasting valuable health-care
resources on an ineffective treatment, and possibly causing harm.”

before posting an idiotic uneducated comment like that do some research.

Gentledroid17 reply is a good example of the type of response coming from the pro-Zamboni lobby. If you don’t share the same opinion, you are certainly part of a conspiracy, a big pharma executive, a neurologist or simply not intelligent.

Can you have better arguments than treating Doug The Box an uneducated idiot?

OK, as an MS patient, I too realize that the CCSVI theory is not yet proven. You should know that the autoimmune “theory” of MS has not yet been proven either ! The Private members Bill is not opening the doors to this procedure…..it is just saying, let’s do the trials and get the evidence. Have you read it ? Your previous comment shows quite the contrary. If you want to talk about wasting valuable health-care resources, let’s take a look at the funds that are spent on ineffective MS medications every year. Most of these medications do not pass the test of scientific scrutiny, but because of the influence that neurologists have over the decision-making process when it comes to Multiple Sclerosis these remain the first-line options for people with MS. I’m not denying that venous angioplasty comes with its risks – it does ! So do the MS medications; yet their benefits remain questionable. Are you aware of the hundreds of people who have contracted PML on Tysabri or of the 11 deaths reported from Gilenya, the only pill-form medication available for Relapsing Remitting MS ? Of course not because we have Canadian neurologists on the record saying that these are safe, and “convenient”. I hope that you will take some time into reading the studies that show that the benefits of the MS medications are not cost effective for any government plan. After having been on chemotherapy to “attempt” to stop the progression of my MS, I was left with damage to the heart. Pity, you say ! Well, I had treatment for CCSVI and I’m faring better than I have in the last number of years…..and that was almost 2 years ago. Would I do it again ? In a heartbeat. Have you seen the CBC report on David Suzuki ? If not, please watch it. http://www.cbc.ca/natureofthings/episode/ms-wars-hope-science-and-the-internet.html Notice the testimonials of Dr. Gianfranco Campalani, a UK heart surgeon with MS who has had the procedure. Notice the desperate attempts of Canadian neurologists to try and downplay the venous connection to MS. Make up your mind….it’s not a black and white issue.

Well, for example the British Health system did a followup study of the MS drugs they were giving to their people. The results were that people on the drugs showed no slowing of the disease progressions. They did help with relapses, but overall, those on the drugs actually progressed faster in their disease than those not on the drugs. This was a country-wide study of all of Britain–following all MS patients.

“…those on the drugs actually progressed faster in their disease than those not on the drugs.”

Do you remember the name of the study or have a link to it? I am curious to read it for myself.

Questions come to mind: Did those on the drugs decide to take them because their MS was progressing at a faster rate in comparison to those deciding not to take the drugs? Were other important variables the same, such as age, sex, co-morbid health conditions, etc.? What was the sample size and margin of error? Were the symptoms entirely due to disease progression, or could side effects from the drugs mimic some of the symptoms of worsening MS?

You would rather “run the risks of wasting valuable health-care resources”, not to mention tax-payer’s money on supporting and caring for those with MS as they become to disabled to work and care for themselves until our MS finally kills us? And don’t vomit out that BS that ‘MS doesn’t kill’! Saying that is like saying someone who got killed in a car accident wasn’t killed by the car accident! The simple fact is that 400 Canadians are going to die this year and every year until they run out of stall tactics to delay research into this treatment, and all needlessly! We have already been condemned to death, and the government has refused to grant a stay of execution. It is as simple as that….

Classifieds:
WANTED!!! Replacements for Health Minister and Gov’t officials who oppose Bill C-280
Qualifications of individuals necessary: compassion, empathy, intelligence and a lack of greed. Must have the best interest of their countries health care system at heart!!! NOT their own…please apply in writing to every MSer in Canada and the UK for approval

Here is a copy of the email I sent to my MP yesterday, before the vote. I think this sums up what all the undernoted comments say, FYI, got no response:

Good morning Mr. Oliver:

I am emailing you as my MP to ask that you please support Dr. Kirsty Duncan’s Bill C-280 in the vote that is scheduled to take place today at 5:30.

I am a person with MS who has opted NOT to undergo the liberation treatment even though I have been diagnosed with significant narrowing in both my jugular veins. I made my decision based on my own assessment of the risks and benefits of the procedure. I feel strongly that Canada has not acted properly in its approach to investigating CCSVI and possible treatments.

As a result, Canadians have travelled abroad for treatment with no or little follow up available in Canada. The result has been lack of accumulation of data, education of foreign doctors and risk to Canadians who experience complications post procedure. Imagine the benefits of Canadian doctors learning about CCSVI and having input into the investigations. Canadian knowledge, proper data collection and safe patient care.

The cost to Canadians, in funding investigation and treatment here, would he nil! If you calculate the tax credit Canadian receive for the cost of having the liberation procedure performed abroad I think that you will find that the tax credits are higher than the cost of paying Canadian doctors to do the work. The results. We are using more tax dollars now, to fund education and the income of foreign doctors, putting Canadian patients at risk and losing the benefits of accumulating data scientifically. Funding this treatment in Canada would use less tax dollars and be of benefit to all stakeholders.

I hope you will make note of my views when you represent me in the House of Commons today.

Could our illustrious health minister even know how many people in her own riding are suffering from MS or unable to get treatment for MS because they are so far north both in the territories and nunavut? I would like to know who is motivating and influencing or who is the mouth behind her voice!

In the search bar type “ccsvi multiple sclerosis”, hit enter, and watch the results come in. Select the “review” filter on the upper right of the screen (9 should come up using this specific search). Of the 9, only 3 suggest there may be a significant link between chronic cerebrospinal venous insuffiency (CCSVI) and multiple sclerosis (MS). 2 of the 3 were done by Zamboni himself, and the abstract of the third review mentions evidence that a truncular venous malformation (embryonic arrest in the vascular trunk formation) may cause CCSVI, which in turn may cause MS. The abstracts of the other 6 reviews range from “there is no evidence” to “the theory of CCSVI in MS is full of s***” (to delicately paraphrase them), often citing inconsistent and/or shoddy methodology.

I’m disappointed in you Macleans. We don’t have infinite resources for infinite research trials. We could be investing these resources into other promising treatments for MS. Instead, we have large scale political pressure overruling scientific criteria in deciding where scarce research funding should be spent. Worst of all, your magazine is contributing to this mess. Did the author actually go through the research articles herself before writing this, or at least get briefed in detail by someone who has done so? The article certainly gives no evidence that this has occurred.

You know what the worst aspect of all is? This sets a precedent for other interest groups in the future: public pressure and media campaigns can be used to overrule proper selection criteria for research funding (however imperfect these criteria may be), substituting any pet project of sufficient popularity.

Your simple search yields simple results. Don’t be so fricken lazy. Take the time and find all the published reports… both pro and con. From the reports I have see so far that did not support a link between vein blockage and MS sufferers the vast majority of the authors were neurologists and the sample size was extremely small. If you just total the sample sizes of pro and con it becomes very evident which side has the most scientific evidence.

Methinks Aglukkaq doth protest too much! Health Canada had LOTS of oppertunity to atleast look into this but they didn’t. I agree, it seen that Aglukkaq is controled by or under pressure from Special Interest Groups like the drug industry or the CIHR who might be under pressure or controlled by Pharma. Does Aglukkaq have a degree in medicine? Kirsty Duncan does. It’s a control game to Aglukkaq and the PC party. They have no issues with allowing drugs that are at best, in-effective and at the very worse, deadly. The Feds wand scientific proof, they aught to have started trials 2 years ago. Since then possibly 800 people with MS have died needlessly. Why, POLITICS! The lack of propper and timely government action to help it’s citizens is unconscionable. Great article!unconscionable. Great article!

Methinks Aglukkaq doth protest too much! She has handled this in a very underhanded maner. Shame on her! Health Canada had LOTS of opportunity to atleast look into this but they didn’t. They dropped us like a hot potato. We are human beings, we want a chance. We are put on hold. Many of us cannot wait! Perhaps worse, good Canadian is going away, never to be returned! I agree, it seen that Aglukkaq is controled by or under pressure from Special Interest Groups like the drug industry or the CIHR who might be under pressure or controlled by Pharma. Does Aglukkaq have a degree in medicine? Kirsty Duncan does. It’s a control game to Aglukkaq and the PC party. They have no issues with allowing drugs that are at best, in-effective and at the very worse, deadly. The Feds wand scientific proof, they aught to have started trials 2 years ago. Since then possibly 800 people with MS have died needlessly. Why, POLITICS, CONTROL and MONEY! The lack of propper and timely government action to help it’s citizens is unconscionable. Great article!

When Ministers have to publicly rebut a Private Members Bill, you know that you’re on the right track especially when there is a majority government. They simply do not want to give credit where it is due. Kirsty did her homework and won’t give up.

I had the CCSVI procedure, and every single one of my symptoms has been gone since I was on the recovery table..I no longer need any medication at all. It was done in July, in Arizona..best thing I ever did, and for the cost of only 2 Tysabri IV’s I had it done.. worth every penny. I know not everyone has the results I did, but why not let them at least have the chance!!

“In her letter to Duncan, Aglukkaq called for “the independence of our
scientific process and the safety of our fellow Canadians,” adding
“However difficult the decision is, as parliamentarians we have an
ethical obligation to put patients’ safety first.”

Angioplasty is paid for everyday for those with cloogges arteries often due to bad diet but Aglukaq and her fellow NeoCons love to play god by having the gov’t deny payig for this self same treament for thse suffering from MS.
What on earth gives them the right to play with our lives in this cavalier manner.
Calling it putting patients safety first is patent nonsense and is verging on the criminal in the way they are lying!

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